ESPU Meeting on Friday 5, September 2025, 10:00 - 10:35
10:00 - 10:03
S25-1 (OP)
Hassan KHAN 1, Ashley TALTON 1, Ilina ROSOKLIJA 1, Josephine HIRSCH 1, Courtney FINLAYSON 2, Allison WEISMAN 3, Diane CHEN 4, Monica LARONDA 5, Elizabeth YERKES 1, Earl CHENG 1, Erin ROWELL 6 and Emilie JOHNSON 7
1) Lurie Children's, Urology, Chicago, USA - 2) Lurie Children's, Endocrinology, Chicago, USA - 3) Lurie Children's, Genetics, Genomics and Metabolism, Chicago, USA - 4) Lurie Children's, Psychiatry and Behavioral Health, Chicago, USA - 5) Lurie Children's, Pediatrics, Chicago, USA - 6) Lurie Children's, Pediatric Surgery, Chicago, USA - 7) Lurie Children's/Northwestern University, Urology, Chicago, USA
PURPOSE
Our multidisciplinary clinic offers patients with differences of sex development (DSD) undergoing gonadectomy the option to enroll in a gonadal tissue cryopreservation (GTC) research protocol. Among patients undergoing gonadectomy, we: (1) assessed rates of GTC counseling, protocol enrollment, and tissue preservation, and (2) analyzed outcomes by diagnosis and laterality.
MATERIAL AND METHODS
We conducted a retrospective review of gonadectomy patients from 2013-2023. Data collected: record of GTC counseling, GTC protocol enrollment, GTC rates, pathology findings. Outcomes were analyzed by gonadectomy laterality and diagnosis.
RESULTS
46 patients underwent gonadectomy (76% assigned female, 44% had germ cells on pathology). Most (35/46, 76%) received GTC counseling, including 88% (29/33) of bilateral and 46% (6/13) of unilateral gonadectomy patients (p=0.006). 19/35 (54%) enrolled in the GTC protocol with 47% (9/19) ultimately preserving tissue. All 4 unilateral and 5/15 (33%) bilateral gonadectomy patients preserved (p=0.033). Among the 10 who enrolled and did not preserve, 7 had no germ cells, 2 had gonadoblastoma (tissue recalled for pathology, preservation not available) and 1 had discordance between germ cell type and gender identity. Details about GTC counseling, protocol enrollment, and preservation rates, and findings by diagnosis will be presented.
CONCLUSIONS
GTC counseling and preservation varied by diagnosis and gonadectomy laterality. While 76% of patients received GTC counseling, <50% enrolled in GTC, and <20% preserved tissue. Those undergoing bilateral gonadectomy had higher counseling rates, but lower protocol enrollment and preservation rates vs. unilateral, findings which may represent choices made due to expected differences in germ cell presence and tumor risk by diagnosis.
10:03 - 10:06
S25-2 (OP)
John SMITH 1, Lauren CORONA 2, Ashley TALTON 3, Josephine HIRSCH 3, Ilina ROSOKLIJA 3, Jax WHITEHEAD 4, Jaclyn PAPADAKIS 5, Diane CHEN 5, Courtney FINLAYSON 4, Earl CHENG 3, Elizabeth YERKES 3 and Emilie JOHNSON 3
1) University of Illinois at Chicago, Department of Urology, Chicago, USA - 2) Vanderbilt University Medical Center, Department of Urology, Nashville, USA - 3) Ann & Robert H. Lurie Children's Hospital of Chicago, Division of Urology, Chicago, USA - 4) Ann & Robert H. Lurie Children's Hospital of Chicago, Division of Endocrinology, Chicago, USA - 5) Ann & Robert H. Lurie Children's Hospital of Chicago, Pritzker Department of Psychiatry and Behavioral Health, Chicago, USA
PURPOSE
Gonadal tissue cryopreservation (GTC) is an experimental option for patients with differences of sex development (DSD) undergoing gonadectomy. Decisions about gonadectomy and GTC are complex due to imprecise tumor risk estimates, uncertain fertility potential, and potential discordance between germ cells and gender identity. We investigated decisional dynamics within families electing gonadectomy with/without GTC to inform clinical practice.
MATERIAL AND METHODS
Participants were recruited from 2022-2023 and eligible if they were counseled in our multidisciplinary clinic and an adolescent/young adult (AYA) patient who underwent gonadectomy at age 11 or older, or parent of a patient who underwent gonadectomy at any age. Participants completed semi-structured interviews about their decision-making process. Iterative qualitative analysis was performed to identify themes/perspectives.
RESULTS
Eighteen participants were included (7 AYA, 6 parents of AYA, 5 parents of children aged 1-3 at gonadectomy). We identified a range of intra-family communication and decisional dynamics. Some individuals relied on simple information and heuristics for decision-making, while others recognized the complexity and turned to clinicians for guidance. Some families were in complete agreement, while others detailed challenges of parent-AYA or parent-parent disagreement. When queried about who was and who should be primary decision-maker, different levels of responsibility by age and transition over time were noted. Representative quotes for themes will be presented.
CONCLUSIONS
Participants recalled a range of communication and family-related dynamics during the gonadectomy decision-making process. The primary decision-maker varied, but patient involvement tended to increase with age. This variability should be considered in clinician conversations and tools for facilitating decisions about gonadectomy and GTC.
10:14 - 10:17
S25-3 (OP)
Bethan JOHNSON 1, Niamh GEOGHEGAN 1, Nicola BRIDGES 2 and Marie-Klaire FARRUGIA 1
1) Chelsea & Westminster Hospital, Paediatric Surgery, London, UNITED KINGDOM - 2) Chelsea & Westminster Hospital, Paediatric Endocrinology, London, UNITED KINGDOM
PURPOSE
Due to controversies surrounding female genital surgery before the age of consent, urogenital sinus (UGS) surgery in our centre, has been delayed for the last 12 years. Our aim was to review the symptomatic/ bladder functional outcomes of unoperated girls with UGS, and identify differences between those with or without a diagnosis of congenital adrenal hyperplasia (CAH).
MATERIAL AND METHODS
Retrospective review of consecutive patients with UGS identified from a prospectively-maintained database. Clinical/ imaging data, renal function and bladder functional assessments were analysed with parental consent. Numbers too small for statistical analysis due to the unique nature of the cohort.
RESULTS
11 patients with UGS were identified, 7 CAH and 4 non-CAH. Median follow-up was 8 (0.5-12 years). All CAH patients were fully toilet-trained bar one infant. All were dry; one girl reported frequency and urgency but no incontinence. No reported UTI’s. All had normal upper tracts imaging (one patient underwent a pyeloplasty in infancy); normal bladder capacity and post-void bladder residuals on ultrasound. None had started menstruation.
Of the 4 non-CAH patients: one patient has normal-capacity bladder with poor emptying/ leakage and catheterises via a Mitrofanoff; a second with poor emptying and bilateral dysplastic kidneys has a vesicostomy; third patient (history of sacrococcygeal teratoma) has a neuropathic bladder on CIC; the fourth has mild bladder dysfunction on anticholinergic treatment. 50% had UTI’s prior to treatment; none have reached menarche.
CONCLUSIONS
Within the limitation of patient numbers, we have identified previously unpublished evidence that bladder functional outcomes are strikingly different between girls with and without CAH. The findings will contribute to ongoing discussions about the ideal age for UGS surgery in this patient group.
10:17 - 10:20
S25-4 (OP)
Ahsen KARAGOZLU AKGUL 1, Ayşe Sena KUŞAK AĞGEZ 2, Arzu CANMEMİŞ 3 and Sadik ABIDOGLU 1
1) Marmara University Pendik Training & Research Hospital, Paediatric Urology, İstanbul, TÜRKIYE - 2) Marmara University Pendik Training & Research Hospital, Paediatric Surgery, İstanbul, TÜRKIYE - 3) İstanbul Medeniyet University Göztepe Prof. Dr. Süleyman Yalçın City Hospital, Paediatric Urology, İstanbul, TÜRKIYE
PURPOSE
Women with Congenital Adrenal Hyperplasia (CAH) and ambiguous genitalia are known to face higher pregnancy-related complications. However, no previous study has specifically examined uterine cervical anatomy in these patients. This study aims to present vaginoscopic findings regarding the uterine cervix in CAH patients before feminizing genitoplasty.
MATERIAL AND METHODS
Vaginoscopy images of CAH patients with ambiguous genitalia were retrospectively reviewed (2018-2024). Demographic data, urogenital sinus (UGS) length, urethral length, and vaginal depth were also recorded.
RESULTS
Fifty-one patients who underwent feminizing genitoplasty were retrospectively reviewed. 8 patients without CAH were excluded from the study. Mean age at vaginoscopy was 26 months (5-98 months). In the cervical images, it was observed that uterine cervix of 82% patients were open, only 18% of them were normal. The uterine mucosa was observed that expand from cervical ostium in most cases. The mean length of UGS was 25.52mm (10-80mm), the mean length of urethra was 17,55mm (5-35mm), the mean vaginal depth was 40,02mm(17-100mm). Association between vaginal depth and cervical anomaly was analyzed, no correlation was found (p=0,340). The relationship between wide cervical opening and age at surgery was also analyzed, there was no relation, but the p value was 0,070.
CONCLUSIONS
CAH patients can conceive, albeit with higher risk of complications. The finding of a wide cervical opening in the majority of our cohort may explain these adverse pregnancy outcomes. To our knowledge, this is the first study in the literature focusing on the cervical anatomy of girls with CAH and ambiguous genitalia, highlighting the need for further research to confirm these findings
10:20 - 10:23
S25-5 (OP)
Jennifer HANSEN-MOORE 1, Amy TISHELMAN 2, Cindy BUCHANAN 3, Diane CHEN 4, Yee-Ming CHAN 5, Nahata LEENA 6, Joseph RAUSCH 6, Hailey UMBAUGH 6, Bryan SACK 7, Rama JAYANTHI 8 and Canice CRERAND 6
1) Nationwide Children's Hospital, Pediatric Psychology, Columbus, USA - 2) Boston College, Psychology Dept, Chesnut Hill, USA - 3) Children's Hospital Colorado, Pediatric Urology & Adolescent Gynecology, Aurora, USA - 4) Ann & Robert H. Lurie Children's Hosptial of Chicago, Division of Adolescent and Young Adult Medicine, Chicago, USA - 5) Boston Children's Hospital, Endocrinology, Boston, USA - 6) Nationwide Children's Hospital, Center for Biobehavioral Health, Columbus, USA - 7) Nationwide Children's Hospital - Toledo, Urology, Toledo, USA - 8) Nationwide Children's Hospital, Urology, Columbus, USA
PURPOSE
Differences of Sex Development (DSD) can be associated with poor psychosocial adjustment. We explored peer acceptance as a potential protective factor and childhood trauma (non-medical) as a risk factor for quality of life (QoL), anxiety, and depression. We hypothesized that peer acceptance would enhance, and trauma would negatively impact psychosocial outcomes. We also hypothesized that younger participants (12-17) would report better psychosocial outcomes than young adults (18-26).
MATERIAL AND METHODS
We recruited from 4 children’s hospitals as part of a larger cross-sectional study on youth with DSD ages 12-26. Participants (57 adolescents and 40 young adults; 35% 46,XX, 60% 46,XY, 5% sex chromosome DSD) completed standardized measures on emotional problems, QoL, childhood trauma, and perceived acceptance from friends. Linear regression analyses examined the role of peer acceptance and trauma on anxiety, depression and QoL.
RESULTS
Greater peer acceptance was strongly related to lower depressive and anxiety symptoms, and better QoL (all p<.001) even when controlling for effects of trauma. Adolescents reported better QoL (p<.05), more close friendships (p<.01) and trended towards less depressive symptoms (p = .05) than young adults. Rates of childhood trauma did not differ in our population from rates in the general population.
CONCLUSIONS
Peer acceptance is a strong protective factor for positive psychosocial adjustment . The transition to adulthood may be an especially challenging time, and young adults with DSD appear to face greater risks for depression and social isolation. These findings emphasize the importance of assessing social functioning and promoting meaningful social engagement.